Prince Snow Farm

10.28.2015

A Little Lesson

After a full day of teaching, a weary mind and a growling stomach called me to the kitchen. It is there that I recall perhaps the most important lesson I will teach all day. {Showing how to break thirds into sixths, modeling it, and looking for that light to shine in the hopeful faces around me was important…of course….that's my job! I teach! } But today, as I look into this sweet face, those baby blues, my beautiful almost twelve year old daughter, I know the lesson I need teach, and reteach. I need to write the lesson plan of my life.

Our daughter has Celiac Disease, and this is Celiac Awareness Month.

She was diagnosed by bloodwork, then by endoscopy at Children's Hospital, Boston.

She was 7.

She hadn't grown in an entire year.

Any other symptoms were somewhat minor. A slight tummy ache before bed at night. When children are young and say their belly hurts, our first parenting response is to feed the…."must be hunger pains". I am horrified at how many times I fed the belly ache gluten, not realizing I was encouraging a hidden disease.

She was a 7 year old who already knew what brick oven pizza tasted like. She knew the crunch of cheddar goldfish and loved eating at friend's houses or out as a family. But suddenly upon diagnosis, her little world was turned upside down. Actually, the whole family was, I suppose.

I know what you are thinking…"I see gluten free foods EVERYWHERE! Restaurants sell gluten free too!" But WHOA Nellie. Slow Down! It's NOT that easy!

A product marked gluten free doesn't mean healthy. In fact, many boxed gluten free foods are high in starches and carbs, and processed. Not all, but many.

And as for restaurants, cross contamination is our enemy. Children's Hospital told us that ingesting as little as a crumb can put your intestines back to where they were.

So now's a good time for me to explain exactly what Celiac Disease is. First off, it's NOT an allergy. It's an autoimmune disease.

If someone with Celiac eats wheat, rye, barley, or contaminated oats, gluten (a protein), attacks the small intestine, and the body tries to fight it with an autoimmune response. The villi of the small intestine are damaged, and proper nutrients cannot be absorbed. If these symptoms aren't treated, other autoimmune problems may develop, like Type I Diabetes, Multiple Sclerosis (MS), certain types of dermatitis, anemia, osteoporosis, infertility, miscarriage, epilepsy, migraine, short stature and intestinal cancers.

(info from Celiac.org)

Our daughter has spent the last five years fighting a disease that to many around her, appears to just mean a lunchbox at birthdays and a homemade lunch each day from mom.

But I am here as her mom, her protector, her advocate, to say it goes so much deeper.

It's a disease about willpower. It's about sacrifice and willingness.

It's about explaining the why's and how's.

It's about reading EVERY. SINGLE. LABEL. TWICE.

For our daughter, it has also meant trying to wrap her little girl mind around why your friends don't just include you in lunch, or dinner or snacks anymore, even though that had been your norm.

But it is also about friends and family that ask, and read, and try to make an 8, 9, 10, 11 year old feel welcomed, and safe, and NORMAL. A gluten free snack, an egg cooked in a clean pan, a pizza order from one of two local restaurants that are very strict in their practices. Food shouldn't have that much of an overwhelming impact on a child's life. But it does. Think about it: movies, class snacks, donuts, friend's houses, birthdays, vacations, impromptu car rides.

This almost twelve year old has fought a valiant fight.

She gave up gluten five years ago and hasn't looked back. She has NEVER cheated.

I'm not sure I could be that strong!

PLEASE SHARE THIS POST in support of or daughter, CMT, and the fight that she and others fight daily.

Thanks to our friends and family for caring and helping.

Thanks to On the Go and Chipotle for being the two local restaurants where we can safely order gluten free food.

Together we can fight for easier ways to manage this disease, and we can pray for a cure.

xo

Monica

In C's words: " I feel like it's been a journey because I have tried different foods, foods I might not have tried if I wasn't gluten-free.But I feel like I have been excluded from some things because I am gluten free. Moving forward I am trying to stay positive, and want to encourage others to know that it WILL be ok, and that we need to find new ways to celebrate life, not just with food!"

Thanks Stacey. It really makes you see how everything we do is centered on food . it is doable, for example to make an entire party gluten free for example…it's the unscripted moments that become awkward for an adolescent.

Your daughter is beautiful inside and out. What a character-strengthening journey she has needed to embrace prematurely. It does seem like Food is the heart of celebrations, doesn't it?! I have a brother-in-law that was diagnosed with Celiac's recently and I'm sure my sister would agree that it definitely affects the whole family as they re-learn how/what to eat! Pre-packaged Gluten-free doesn't mean yummy or healthy and it is often more expensive! My heart goes out to your daughter and yes, i agree we need to learn new ways to celebrate:) Thank-you for sharing. I'm sure as you comment above that it IS the unscripted moments that are awkward! Hugs(())I

I wanted to say Monica, that this is very touching. You know this story of your precious daughter and the brave journey she is on with you at her side moves my Mother heart so deeply. She is brave and so are you to meet this journey head on and educate yourselves and empower one another.She is a beautiful little angel inside and out and thank you for sharing this information with us.Jemma

Monica, this was a beautiful post and story, and yes, lesson. Thank you for sharing with us, and please thank C. as well. I was having many problems all summer and they tested me for Celiac, but it was negative. Now I have a better read on all that it entails. A close and strong mother/daughter team is the best!

I did not realize that my body was rebelling against gluten, till I was quite "olden."

I do not feel that I have full blown Celiac Disease. I probably just have the lesser form. No, I will not be tested. I was tested for Lactose In., when it was obvious to me that I was thus. And naturally, the testing gave me the horrid results, I expected. So.... No! No Celiac testing! I know what will happen.

As it has, few times, when not knowing what was in a boughten soup, etc.. Which is a hard learning experience.

I did suffer for years, with IBS symptoms. And I am quite sure, that all those years of "horror" could have been avoided, by trying to go Gluten Free and Lactose Free. But. No one told me. ,-( And I did not search enough.

But Gluten Free is Everywhere. Hahhhhhhhhh... Oh yes, we learn that is a crock, soon enough.

The only time I am fully sure, of what I eat, is home.... Eating what my husband cooks.

My heart goes out to your brave little girl. Guess the only silver lining in this is... That this hurts, when we don't follow the dietary rules. And memory of that hurt, is a strong incentive.

But all the social aspects, for a growing child, must be so, so, so hard. Many hugs to her. And to you, her Protector.

I appreciate this post. My daughter doesn't have celiac disease, but she was diagnosed gluten and lactose intolerant last spring, and it's a challenge cooking GF and even more so eating out/traveling. She's abroad on her gap term and mostly cooking for herself. "Sans gluten" is how you say it in French. Your daughter looks so healthy and happy; you're clearly managing her diet very well.

hi monica... thanx tons... i have a close friend that has it and i understand it more now... i never knew chipote was a good restaurant to go to... will try that out with her... and tons of thanx for the recipes... hugs2u with a side of barks...

I love the feeling of reclaimed, repurposed furniture. Furniture that makes you feel like you are living in Provence , or in the middle of ...

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